Kevin’s Mission to Live Beyond Prostate Cancer
- Amateur bodybuilding competitor and father, Kevin Allen, 61, is turning his cancer journey into a renewed sense of purpose by launching a nonprofit supporting cancer caregivers and advocating for prostate cancer awareness among men.
- He’s living with stage 4 prostate cancer and has since found hope through a clinical trial. He says his cancer is currently undetectable.
- The Prostate Cancer Foundation encourages Black men to begin screening at 40 years old, which is 10 to 15 years earlier than men at average risk. The National Cancer Institute says among Black men, “death rates are higher” or “more than twice” that of white men, sparking increased efforts to boost early detection for this demographic.
- Clinical trials help doctors discover more effective treatment methods. They also give patients a chance to try a treatment before it’s approved by the U.S. Food and Drug Administration (FDA), which can potentially be life-changing.
- Despite the great benefits of clinical trials, they also come with risks (like potential side effects that are not fully understood yet). People interested in participating in clinical trials must first talk with their doctor to see if they would be a good fit.
Prostate cancer, the most common cancer among men, begins in the walnut-sized gland located between the bladder and rectum. This gland produces fluid that nourishes sperm, and regular screenings often catch issues before symptoms appear.
Read MoreView this post on InstagramAllen’s journey began in 2015 while running his personal training studio.
“I was an avid cyclist,” he told SurvivorNet, “but when I went to sit on the seat, I couldn’t. But I didn’t think anything of it, I thought maybe I just needed to take it easy.”
What followed was a cascade of symptoms—dramatic weight loss from 220 to 170 pounds, excruciating pain, and an inability to urinate.
“I kept going to the doctor… but they kept telling me, ‘We don’t know what’s wrong with you’ for six months, until I couldn’t walk.”
Eventually, a new doctor uncovered the truth: Kevin was living with stage 4 prostate cancer that had already spread to his spine, hip, and lungs. At this metastatic stage, the disease had moved beyond the prostate, making treatment more complex. Yet even in the face of advanced cancer, there are still paths forward—options that offer patients and their families not just care, but hope.
WATCH: Treating Advanced Prostate Cancer
Allen underwent a grueling 12-hour spinal surgery, 15 rounds of radiation, and chemotherapy that ultimately failed.
“I wasn’t expecting to make it out of 2016,” he says.
“Chemotherapy definitely has a place in the treatment of many men with metastatic prostate cancer … It can be effective and it can help prolong survival for many patients,” Dr. Vivek Narayan, a medical oncologist at the University of Pennsylvania, tells SurvivorNet.
WATCH: When Is Chemotherapy Used For Advanced Prostate Cancer
Advanced prostate cancer is usually treated with a combination of different approaches, which may include hormone therapy, chemotherapy, immunotherapy, targeted therapy, or radiation.
“My first treatment was a 12-hour surgery to scrape all the cancer out of my spine, which helped me walk again.”
Despite the physical toll—including incontinence and erectile dysfunction—Allen found strength in his family.
“There’s no room for fear. I wasn’t allowing that to enter my head. With three children and a beautiful wife, I had a lot to live for. I had my moments of tears and breakdowns, but they didn’t occupy my overall space.”
View this post on Instagram
His cancer journey took a hopeful turn when he joined a clinical trial using immunotherapy [specifically Keytruda, a type of cancer treatment], which helped suppress his prostate cancer.
Immunotherapy is a cancer treatment that triggers your immune system to search for and attack cancer cells, microscopic or more extensive tumors.
SurvivorNet spoke with the pioneer in immunotherapy research, Dr. James (Jim) Allison at MD Anderson Cancer Center, who was awarded a Nobel Prize for the development of the science called checkpoint inhibitors.
“Immunotherapy is rather unique in that for the first time, we’re getting truly curative therapies in many kinds of disease– not just in melanoma but in lung cancer, kidney cancer, bladder cancer, Hodgkin’s lymphoma, Merkel cell cancer, head and neck cancer,” Dr. Allison tells SurvivorNet.
“I think that the most powerful combinations coming up are based on combining immune blockers or enhancers, but also drugs that can directly kill tumor cells to really have a double whammy,” Dr. Allison added.
While there are many immunotherapy options, Keytruda is revolutionizing the cancer treatment world as it is gaining more and more U.S. Food and Drug Administration approvals to treat various types of cancers. In fact, in 2021 alone, Keytruda was approved 15 times to treat different types of cancers, from early-stage breast cancer to kidney cancer.
WATCH: Keytruda is Not for Everyone. Immunotherapy Needs to Be Tailored
Clinical trials help doctors better understand cancer and discover more effective treatment methods. They also give patients a chance to try a treatment before it’s approved by the U.S. Food and Drug Administration (FDA), which can potentially be life-changing.
Despite the great benefits of clinical trials, they also come with risks (like potential side effects that are not fully understood yet). People interested in participating in clinical trials must first talk with their doctor to see if they would be a good fit.
WATCH: Clinical trials can be lifesaving.
RELATED: Clinical Trials Need More Minority Patients
“My prostate cancer is undetectable right now, but my bone cancer is very pronounced,” he explains. Still, Allen remains active and deeply committed to helping others.
“Cancer is like a storm,” he says, “and at times, it’ll knock you on your butt, but you can’t give up.”
That philosophy led him to launch “Living Beyond Cancer,” a nonprofit dedicated to supporting caregivers of cancer patients.
“Providing for cancer patients is no easy task. Even caring for myself was not easy at times. But to see those nurses of oncology and those families who give their all in supporting us, I want to give something back,” Allen said.
Becoming a caregiver for someone with cancer is both a deep act of love and a significant responsibility. This role can include attending doctor visits, supporting treatments, helping with everyday tasks, and—perhaps most importantly—offering emotional comfort.
View this post on Instagram
Caregivers often emerge from a patient’s close support circle: a spouse, parent, sibling, friend, or even a child. These individuals take on multiple roles to ease the journey for someone they care deeply about.
For Allen, survival is not just about treatments—it’s about purpose. “I focus on the positive and not the negative, so feeling alive means I get to see my sons go to college orientation.” His hope is simple yet profound: to continue watching his children and grandchildren thrive.
Helping Patients Understand Prostate Cancer Treatment Options
- Metastatic Prostate Cancer Treatment is Improving
- Don’t Believe the Hype: Do Your Own Research on Prostate Cancer Treatment
- Genetic Testing for Advanced Prostate Cancer Can Help Tailor Treatment
- Informed Care, Better Outcomes — Genetic Testing For Advanced Prostate Cancer
- How to Treat Late-Stage Prostate Cancer: New Treatment Developments
Prostate Health Among Black Men
The Prostate Cancer Foundation (PCF) has cancer screening guidelines with Black men in mind.
Since Black men tend to be diagnosed with prostate cancer at younger ages compared to other racial groups, the new guidelines state Black men should consider screening at 40 years old since this demographic group is regarded as a “high-risk population.”
WATCH: How to Address Racial Disparities in Cancer Care
“Few guidelines have outlined specific recommendations for prostate-specific antigen (PSA)-based prostate cancer screening among Black men,” researchers for PCF said in its report published in the Journal of Clinical Oncology.
“Discussions with health care providers about baseline PSA testing should begin by the time Black men are in their early 40s, and modeling data suggest prostate cancer develops 3-9 years earlier in Black men compared to their peers. Lowering the age for baseline PSA testing from 50-55 years to 40-45, followed by regular screening intervals until the age of 70, would reduce prostate cancer mortality in Black men,” the PCF said in its report.
RELATED: Black Men May Be More Susceptible To Advanced Cancer Due to Biomarkers in the DNA, Study Says
SurvivorNet holds an annual Close the Gap conference to educate, spread awareness, and ultimately work to eliminate racial disparities in cancer care. Our efforts aim to ensure everyone has access to education about cancer, screening recommendations, treatment options, clinical trials, and more.
Prostate Cancer Screening and Warning Signs
Prostate cancer is the most common cancer in men. It starts in the walnut-shaped prostate gland between the rectum and bladder, producing the fluid that nourishes sperm. Fortunately, most prostate cancer is caught with screening examinations.
When you do get screened for prostate cancer, your doctor will run a few tests.
One of the tests is the PSA test, a simple blood test that screens for prostate cancer. It looks for more significant amounts of protein-specific antigen (PSA) in the blood. An elevated PSA test does not always mean you have prostate cancer. It could also reflect that your prostate is enlarged, which is common, or it could signal an infection or inflammation.
Your doctor may also conduct a digital rectal exam (DRE) to check your prostate for lumps.
Depending on the results of these tests, imaging scans and a biopsy may be ordered.
WATCH: How Gleason Grade Determines Treatment
Prostate cancer does not always behave the same in every man it impacts. The cancer can be considered “low-risk” and can be slow-growing, and treatment might not be necessary. In other men, the cancer may grow faster or more aggressively, requiring more immediate treatment. Because of this, there is some debate about screening.
The United States Preventive Services Taskforce recommends men at average risk between the ages of 55 and 69 years old should talk with their doctor about the pros and cons of prostate cancer screening.
The American Cancer Society recommends that men at age 50 who are at average risk should begin screening. Men who are at high risk of prostate cancer should begin screening at age 40. Men with a close relative diagnosed with prostate cancer should consider annual screenings in their 30s.
Most doctors agree that men over the age of 70 do not need screening.
SurvivorNet experts suggested that men consider factors like their family history, genes, and age when deciding whether and when to screen.
Symptoms of prostate cancer may include:
- Urinating more often
- Waking up in the middle of the night to pee
- Blood in your urine
- Trouble getting an erection
- Pain or burning when you urinate
- Pain in your back, hips, thighs, or other bones
- Unexplained weight loss
- Fatigue
The Role of a Caregiver
SurvivorNet gathered expert insights from oncologists, social workers, and patient advocates to provide guidance on how caregivers can support their loved ones through treatment and beyond.
Attend Medical Visits
These visits can be overwhelming for patients. Your presence can help them absorb critical information, ask clarifying questions, and make informed decisions.Connect with Navigators
Request to speak with a patient navigator or hospital social worker. These professionals can assist with everything from transportation and insurance paperwork to housing concerns and legal advice.“We have a really wonderful program at [NYU] where we use lay navigators,” added Dr. Joseph, “meaning they’re not nurses, although you can use nurses or social workers—that pretty much helps newly diagnosed cancer patients through the continuum of care.”
WATCH: How Patient Navigators Can Help
Navigators may also:
- Join future appointments
- Evaluate next steps in care
- Assist with immigration and housing issues
- Navigate financial or legal concerns
- Track Symptoms and Emotions
You may notice changes before the patient does. Keep communication open and regularly check in on how they’re feeling, physically and emotionally.
Promote Patient Independence
While caregiving often means stepping in, remember the value of stepping back. Encourage your loved one to speak for themselves and make their own choices whenever possible.“Some of the best examples that I have seen in caregivers,” said Dr. Jayanthi Lea, a gynecologic oncologist, “are those spouses or loved ones who really, almost sit back and they allow the patient, or they want the patient to express what the patient feels first, rather than barging in.”
“Step back a little bit and let the patient speak for themselves,” she continued. “Let them express what they are feeling. That is so important for the patient’s overall quality of life and well-being.”
Caring for the Caregiver
Supporting a loved one through cancer is demanding, and it’s easy to lose sight of your own well-being. But your strength is fueled by self-care.
“It is important to have some things that you can do that are kind of outside of the focus of caring for somebody that you love with cancer,” said Julie Bulger, manager of patient and family-centered care at Vanderbilt-Ingram Cancer Center. She suggests relaxing activities like going for a walk or getting a massage.
Caregivers are also encouraged to seek mental health support and join caregiver support groups. These steps can reduce the risk of caregiver burnout—a condition marked by chronic fatigue, stress, and emotional strain caused by prioritizing someone else’s needs over your own.
Caregiving is one of the most compassionate roles a person can take on. It’s not always easy, but through small acts of care and moments of presence, caregivers bring hope, stability, and love during one of life’s most difficult journeys.
Allen’s nonprofit aims to support this critical role in the cancer care ecosystem with “Living Beyond Cancer.”
What to Consider When Clinical Trials Are an Option?
Within the U.S., all new drugs must go through clinical trials before the FDA approves them. Although the rewards of clinical trials can be great, they also come with risks. Talking to your doctor about this before enrolling in a trial is important. Some risks to consider include:
- The risk of harm and/or side effects due to experimental treatments
- Researchers may be unaware of some potential side effects of experimental treatments
- The treatment may not work for you, even if it has worked for others
Before you enroll in a trial, you must be allowed to read the consent documents thoroughly and to ask any questions you may have. The documents will likely contain the following:
- The purpose of the research
- Any risks and benefits expected from the research
- Information about procedures that may cause discomfort (like frequent blood tests)
- Any alternative procedures the patient might consider instead
- How the patient’s information will be kept private
- How long is the study expected to take
- A form confirming you are participating in research voluntarily
- Whether any compensation or additional medical care is available if some sort of injury occurs
- The patient’s rights (like the right to stop research in the middle of the trial)
- Contacts for any patient questions
Patients are allowed to walk away at any time during the trial. Understanding your rights as a voluntary patient is important before you participate in a clinical trial, and understanding that the treatment may not work is also crucial.
Do Clinical Trials Cost Participants Anything?
Clinical trials may also have no extra cost for the participants, as the study’s sponsor may pay for the treatment and any additional care. Some sponsors even pay for travel to and from appointments or treatment centers. Patients should ask what will be paid for before signing up to be part of a trial.
The ‘Placebo’
During the treatment of an experimental drug in a clinical trial, while some participants receive the real thing, others do not. These participants receive a placebo.
The placebo is “an inactive substance or other intervention that looks the same as and is given the same way as an active drug or treatment being tested. The effects of the active drug or other intervention are compared to the effects of the placebo, as defined by the National Cancer Institute.
In some cancer clinical trials that are “randomized,” patients who enroll are randomly assigned to receive either a placebo or the new experimental drug being studied. If the clinical trial is “double-blinded,” that means that neither the patients nor the doctors running the clinical trial know who’s in which group. This is an important part of a clinical trial design because it safeguards against bias and the possibility of skewed results.
It’s important to know that getting zero treatment isn’t usually the reality of the “placebo arm” anyway.
Instead, when patients with life-threatening cancers enroll in randomized clinical trials, the two groups are often broken into the new, experimental drug and a “control” group that receives the “standard-of-care” treatment.
Treatments considered standard of care are those that experts accept as the go-to treatment for specific cancers. Standard-of-care, in other words, is the most used treatment.
In many cases, it might involve a combination of chemotherapy, surgery, or radiation, but not always.
How to Find a Clinical Trial
If you want to participate in a clinical trial, your first step should be to talk with your doctor. They can address many of your initial questions and help you determine if you would make a good participant.
Another crucial part of clinical trials is finding the right one for you. SurvirorNet has a resource to help with this called the Clinical Trial Finder.
The portal provides resourceful information to more than 100,000 active clinical trials. You can research this tool for yourself or someone else based on a few simple questions about your condition and location.
Learn more about SurvivorNet's rigorous medical review process.
